Wednesday, March 13, 2013

Wednesdays with Dorothy: "I’ve Got Myself in a Terrible Mess"

The telephone rang at about 3:30 in the morning one Saturday. It was Dorothy calling.

“Charlie, can you come over here? I’ve got myself in a terrible mess.”

I asked Dorothy what was the matter, and she explained to me that she had been very ill throughout the night. She had called 911 and the EMTs were already on the scene. Fortunately, I did not have to go to work that day, so I was able to get dressed and go on over to Dorothy’s apartment.

At this point in Dorothy’s life, she was using a cane to get about and had a bedside commode to use when she had to get up during the night to avoid having to make the trip to the bathroom. There was the danger of falling or soiling herself. Since her bout with colon cancer several years earlier, she had been managing her colostomy bag independently with the help of home health nursing which made visits to her home two or three days a week. Medicaid covered home assistance providing for healthcare needs as well as housekeeping and assistance with bathing. On this night, she had had such gastric disturbance that her colostomy bag had burst loose, soiling her bed and leaving her too weak to help herself.

When I got there, I went up to hospital with Dorothy while they evaluated her in the ER. They administered IV fluids because she was dehydrated and gave her some medicine for her nausea and diarrhea. I went back to her apartment to clean up for her. Dorothy was very fastidious about keeping her place neat and clean, and was embarrassed that she had left a mess as a result of her illness. Since Dorothy had given us a spare key to her apartment, I was able to go back to her place to do some cleaning up. Later, Dorothy’s friend Lona came by to help. The mattress was so soiled that she decided to replace it with a new one. Dorothy later reminded me that the mattress we had to replace was the one she had bought years before when I had taken her out shopping for a new one.

They didn’t keep her for very long in the hospital. She was sent back home the same day after a few hours of observation and assurance that she could keep fluids and nourishment down without getting sick. It was only a matter of days, however, before she had to be readmitted to the hospital. With her second visit, more attention was given to getting her stronger and adjusting her medications. When she left the hospital this time, her friend Nioka insisted that she come home with her for a few days until she got her strength back.

Looking to the not-so-distant future

All of us were concerned that Dorothy would not be able to safely stay by herself in her apartment much longer. Since she had once been under the Department of Mental Health and Mental Retardation, I made my first call to them to see if they could help in transitioning Dorothy to another level of care. I recalled talking with Dorothy’s case manager a few years earlier right at the time her case was shifted out of the Department of MHMR. “In her most recent testing, Dorothy tested out of the Mental Retardation classification, so we are shifting her services so that Medicaid can provide more in-home services.”

I had done testing on our clients years before when I was with the St. Andrew’s Foundation. Part of our regulations was to provide testing on each client using the Adaptive Behavior Scale. I understood from this testing tool that our definition for mental retardation is not simply one’s IQ level – it is as much defined by social skills and adaptive behavior as it is intellect. For that reason, I could understand how Dorothy, at that point in her life had “tested out” of the mental retardation label. Dorothy herself spoke with me about it on more than one occasion, speaking with some pride that she was no longer under the MRDD classification. The good news was that it had allowed her to stay in her apartment with home services that the Department of Mental Health and Mental Retardation would not have provided for. The bad news was that her case had been closed with the State MHMR Department. The only way to even try to get services for her would be to re-apply and get on a waiting list. I was all too familiar with waiting lists and how long it would take to even get seen due to the unfortunate lack of services in the state.

Dorothy’s friend Lona had been very helpful in recent years, so she and I were both looking into what would need to happen in order to get Dorothy place in a nursing home, even though Dorothy herself remained adamant about not wanting to leave her home for a nursing facility. In the meantime, Dorothy’s health rallied. After a few days at her friend Nioka’s house, she was stronger and was able to go back to her apartment. Her 82nd birthday was coming up, and she was making plans, as she did every year for a big celebration.

A Grand Birthday Party

For many years, Dorothy had used her birthday as an occasion to celebrate with her friends. Sometimes she would order a cake, but for at least the past two years her friend Nioka had made the cake herself. This year the cake theme “Princess” and the party location was The Cracker Barrel.

Dorothy at 82

Years before, Dorothy had mentioned to me that one thing that she had always wanted to have was a tiara. It just so happened that my daughter, who was 11 or 12 at the time, had seen a tiara set with rhinestones in a department store and said she wanted it for her birthday (what Dad would not delight in getting his daughter a tiara?). Having had that experience, I knew exactly where to get Dorothy her own tiara. After I bought it, my wife decided to use her artistic skills to make the tiara even more beautiful and personal. She bought some jewelry paint and colored the clear rhinestones to look like amethyst, Dorothy’s birthstone. That tiara was presented to Dorothy on her birthday – she must have been a mere 75 at the time. Since that day, Dorothy would wear her tiara on special occasions, so it made sense now for her 82nd birthday to be celebrated with a princess theme.

The party was a great success, Dorothy had a wonderful time with friends, and she was beginning to be open to alternate living arrangements. The church she attended, Glen Iris Baptist Church, had a ministry at the Trade Towers apartment building which offers assisted living options for seniors. Lona and Nioka had taken Dorothy over there to see the apartments, and Dorothy called me afterwards to tell me that she was thinking about making the move to assisted living.